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One of its kind

Welcome to the Fest. This isn’t like those other fests that most people look forward to. Neither stellar pro shows nor the best rock bands glamourize the evenings here. Celebrities don’t come down to raise funds for a cause. In fact nothing in vogue actually happens at this fest. Yet , this event has managed to secure a space in the hearts and calendars of several hundred people for two decades now!

We, are the Rehabilitation unit team of Christian Medical College and Hospital, Vellore (India) and Welcome to ‘Rehab-Mela’ , as we call it.

The prestigious Mary Varghese Institute of Rehabilitation(a.k.a. Rehab) of C.M.C. has been organising the Rehab Mela annually since 1994. It is a get together for alumni of Rehab with Spinal cord injury (SCI). These people have undergone several months of rehabilitation at the institute. The team of Rehab includes doctors , nurses , physiotherapists , occupational therapists , social workers , psychologists and prosthetists & orthotists.

With an injury to the spine, human body gets paralysed. Some injuries cause a paralysis below the waist (paraplegia) , whereas more severe ones affect even the arms and trunk muscles (tetraplegia). Hence day-to-day activities such as bathing , feeding , dressing , toileting and movement become difficult. A Rehabilitation institute provides the spinal injured person with holistic training (physical , emotional , social and vocational). It is here that he/she learns to live his/her life all over again. Read more about it here.  Perhaps this is the reason why Rehab alumni feel so attached to this three day get together. Inspite of their challenges , they make it to this event every year with their family. For most of them it is an oppurtunity to revisit the school that taught them how to live life all over again.

On the first day at the mela , we conduct a medical checkup for the alumni. Besides helping us keep track of the change in their levels of independence , it facilitates appropriate referral to the main hospital.

Alum and therapists at a shot put event

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Wheelchair race. PC: Emily Lunden

Sports events are the highlight of the second day. The alumni are escorted by students , therapists and traffic police in a kilometer long chain of wheelchairs , trolleys and hand driven cycles to the stadium. Ranging from wheelchair racing to javelin throw to more specialised games for the tetraplegics , the outdoor sports are an earnest attempt to give them a taste of the paralympics.

Sunday is  THE entertainment evening. The entire rehab team takes turns to perform on stage because entertaining the alums is as much a responsibility of Rehab staff as is treating the patients. The doctors drop their drug charts and therapists forget the pushup count to do the lungi dance in Rajnikanth style. Next on stage , cracking us all up is our social worker wearing sunglasses in the evening , delivering a set of extremely hilarious colloquial dialogues. These are the celebrities for the alumni. They don’t need any pro shows.

The stage all set. P.C : Shriyans Jain

The stage all set. P.C : Shriyans Jain

In turn the alumni amuse us with their set of skills , ‘wheelchair dance’ being on the top of the charts. Over the years , the shy ones bloom out to become poets , singers and Rangoli artists among other things.
It makes me proud and surprised all at once to see what we have come to mean to these group of individuals. But then , I guess they have their reasons.

The other alumni at this mela and the medical team have seen these people when they were broken and falling apart (both literally and figuratively). Depressed or angry or clumsy or all of that together.  And then we all had seen and helped them cope. When among the old friends and therapists, they feel like a family. Some say it is also because their wheelchair or crutches or the braces up their legs are not stared at. Some alumni say that for all the love and respect  that has been showered upon them over the years of being associated with Rehab , they want to forgive the hatred of the world. They  want to seek out to the society that needs them regardless of their physical disabilities.
Now that, is the resource that this mela aims at tapping. Goosebumps , smiles , tears , laughter , pride are only a small part of the bigger picture. This get together has proven to be a fertile ground for many positive initiatives like the Dr Mary Varghese Award Foundation (Read about Dr Mary Varghese here) , The Spinal Foundation (a non profit organisation) and alumni meets in other Rehabilitation centers.

As these alumni get back home charged up with goodness to give , we get back to our clinic and therapy rooms to rehabilitate another army of empowered individuals. Empowering each rehabilitated individual and enabling them to help rehabilitate many others like them is the vision.

In the following blog posts over the next few weeks, I will share with you stories of some alums (only from in and around Vellore) telling us about what this Mela means to them. Even the best of my attempts to write about it fails to match up to the palpable excitement in their voices to come!

Will you take my kid to school?

Namit (name changed) was ready for discharge after a 3 month stay at our spinal injuries rehabilitation center. But instead of joy, I sensed restlessness on his face. Responding to my best wishes and “you better study well”, he whispered in a worried tone – “Dad is planning to home school me; I’d be allowed to go to school only for exams, can you please talk to them?”  Working a way out for all his problems was my job as his physio, but this one was a little too difficult to handle.

The shy fourteen year old came to our rehab center after a surgery to correct his extensively bent spine, a condition called scoliosis. He had started to develop this condition at ten years of age which had made running impossible and even walking difficult for him. But following the surgery, which corrected the bending, he developed paralysis down his waist and tightness in his legs.

Working on his physical impairments was both fun and challenging. While it was fun to see him speed his wheelchair away as his mom tried to run with a cut pomegranate behind him; it was challenging to get him to perform well at therapy as he would never eat well and have very little endurance.

Every decision in planning his rehabilitation goals revolved around making him independent enough to go to school. By the time of discharge he was up and about with a walker. He had progressed significantly from the post surgery phase, but his walking was still slow and strained. It was not going to be easy for him to go to school and play with friends like 5 years ago, but it was definitely possible!

With ten minutes in hand before he leaves to the station, I couldn’t have changed his father’s mind. His father’s decision, I knew with experience, had deeper routes than what could seem to an outsider like an indifference towards education and schooling.

Let me draw you a picture of what a normal day at school is like for kids like Namit, with varied disabilities. Boarding the bus/ auto / rickshaw safely and disembarking at the school need special care and assistance from the driver, conductor, parents and neighbours. Reaching classrooms on upper floors with no lifts and ramps and making it safely to the toilets with narrow doorways and steps at the entrance require an attendant. Sitting for hours of classes and examinations when the medical condition needs breaks, calls for patient and understanding teachers. Sick days off school affecting attendance rules and policy adjustments need a wise and enthusiastic Principal.

Can't wait for school

Can’t wait for school

Going gets tougher if there are bullies at school and teachers who vent their frustration by taunting the child. And then there are the relatives and neighbours who warn parents of calamities that can happen at school, seeming to be wishing hard for things to go wrong. With all these factors alongside the medical debts and mortgages that parents are working hard to repay , homeschooling seems like a valid alternative.

I consoled Namit saying, “I’ll tell them what I can and you try your best to convince them” knowing very well that neither could change the father’s mind. Just then a loud angry voice filled my head. It did not cease as I continued to talk to him, like the screeching noise from a microphone that refuses to behave right.

IT IS NOT OKAY TO HOME SCHOOL – went the voice. All these months of rehab, only to deprive the child of the one thing that gives him so much joy? Teaching him words out of a bundle of pages in closed walls could replace the school environment, you think? Making the child feel disabled by locking him inside a house and then empowering him by giving certificates of merit for clearing exams?

Home schooling is like pulling a child out of the cricket ground and gifting him a gaming console.  Educating at home might be a nice alternative that the government used to support for such children, but teaching in a secluded environment waters down the very essence of education. It might teach the child how to make sense of physics and math, which is important I agree, but it will never build a confident happy individual. The warmth and tempering that the fresh clay like mind receives at school can’t compare to the nurturing by a tuition teacher coming home.

I felt helpless, like the many times before. When I worked with Haemophilia unit, most of my (and my co-therapists’) therapy time went in explaining the importance of overcoming the fear of bleeds and sending the child to school. Yet, when kids came for follow-up, we realised that our attempts were futile. Only a handful of financially secure families and a few poor parents with good government medical facilities nearby, sent their children to school.

I stood there feeling that I had failed as a therapist as Namit left Rehab. But then there is only so much a doctor, a social worker, a therapist or a medical institute can do. The ball soon after  a differently able child’s discharge goes into the mad wild world, and remains there. It is now for the society to shape the child’s future.

To tell you about the less dismal side of things, I know young people who make it to school and college despite the complex dynamics that surround the process. I have a friend who goes to college and every morning her friends make a temporary ramp for her so that she can negotiate the few stairs at the entrance. I have a friend who lives alone in the US to pursue his Masters education. I also have met parents of kids with Haemophilia who send their children to school as they wait patiently knowing that their child could have bled at school and that would mean an emergency. I know a spinal injured rehabilitated girl who’s Principal has made several special arrangements including arranging his own car and driver to bring her from hostel to college. I also know of a bus conductor who carried a child into the bus, packed the wheelchair and then disembarked the child safely at school, every single days, several years in a row.

So then what could it really take to send Namit to school? A rehab centre and good medical care? Yes. But more than that, understanding neighbours, concerned relatives, supportive schools, sensitive classmates, perseverant parents and a strong heart were needed.

That night I dreamt about a child walking with a walker around the corridors of something like a government school in a small village. It must have been him! I hope he makes it someday.

Safe in sickness

If only the public transport system in my country was less crowded, she would be able to discover the world by herself
said my head as I tightly clenched the overhead supports and planted my feet stronger. The bus driver who was taking my friends and me to her town was definitely an  F1 racing driver in making. He slowed down to let a flock of sheep dotted with school kids pass by and my head went on…

So many colleges in this city, but barely any accessible for a wheelchair user; what a waste! Going to college would have been such a struggle for her’.

We hopped off the bus and walked into Nelvoy, which means ‘paddy fields’ in Tamil, we learnt later that day. Curious, blank stares from every door and window but fortunately everybody seemed to know everyone else’s addresses and that guided us through.

How did she cope with all the stares, rumors, unsolicited advice, expectations and other such concomitants of a closed knit community?’, I wondered.

My mind took barely an hour to try carrying the burdens of her life and even cook up some of its own. Taboo. Inadequacy. Inaccessibility. Little did it know then about the amazing person that Ramya was. At last we arrived at Ramya’s home and were greeted by warm smiles. She lives with her parents and a sister. Over the interview that followed, Ramya taught me some absolutely invaluable lessons that would stay with me for the rest of my life.

Ramya

Ramya


Ramya had a spinal cord injury that paralysed her down her waist. Interviewing her was a part of my Rehab mela post series- ‘One of its kind’ that I began a few months ago. You can find the earlier post here.


Ramya is the happiest ‘happy person’ I have had the fortune to meet. Imagining her in depression or bed bound is as difficult as looking straight up at the midday sun. But the injury and paralysis had tied this exuberant soul down to the bed and the lack of awareness about appropriate management made her stay in there for an entire year. It was only after she underwent rehabilitation that the mourning parents felt relieved. She learnt to walk with the help of two crutches and was trained to become independent in most of her self care activities.

The venue for the interview had been pre-decided by her and as we escorted her to the place, her neighbours peeped out from their homes. She had only good things to say about each one of them. So looking through her eyes this time, the stares seemed more like a supportive gesture as the clutter of the crutches announced her arrival.

Walking on crutches consumes time and energy for high level paraplegics and hence she chooses to go around college using a wheelchair. She made no mention of any accessibility issues though. That did not confirm the absence of any architectural barriers, but just that she didn’t find them exciting enough to deserve a mention. Her friends and teachers made the cut. Jabbering on she described how her occasional appearance with her crutches and knee braces at college made her the center of attraction for the day. She enjoyed that the crutches let her make eye contact without needing to look up while talking.

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Once we reached her chosen spot, we spent some time shooing away the monkeys and convincing the kids to not Tarzan into the frame from the tree branches around. And then we let her tell us about her life after the injury, rehabilitation and her perspective about life at the moment.

Watch her answer some of our questions here as you read on.

Instead of dwelling on the painful times following the injury, Ramya chose to describe how the very first Rehab visit changed her life. Her insides wrenched at the sight of suffering, pain and disease. She saw others like her for the first time and soon realised that she could at least eat with her own hands and recognize her family and friends, unlike many other Rehab inmates.

And she thanked God for keeping her safe in sickness.

She paused for a bit, as if letting me to reflect on the profoundness of her statement but continued zealously before I could absorb its entirety.

The next question would bring furthermore joy to her face because Rehab Mela is the most awaited event of the year and the best part of her association with Rehab. The excitement starts weeks in advance and the nostalgia lasts a month.

She told us she was a fan of the informal entertainment shows by the Rehab team but was too shy to go up there herself. This year after motivation from her peers she narrated a self composed poem on stage. She even managed wearing the traditional Indian wear- Saree. Wrapping up the 9 yards of gorgeous Indian wear is no easy task for most young women (I’ve tried too) and she managed that while handling a wheelchair. When asked about it she replied that she shouldn’t compromise with the person she would like to be. If a Saree fits a certain occasion, Saree it must be.

Earlier today, my mind was building up a castle of burdens for this girl. But now it looks like those burdens were probably my own understanding of the world or merely my insecurities. I learnt about gratitude. About being thankful even in pain and feeling secure in sickness.

Standing tall

His amiable disposition keeps him occupied at the Rehab Mela. When not surrounded by friends or the medical team, Mr.  Bharatrajan will be found delivering a piece of prose or moving to the beats of some popular Tamil number on stage. To pen down his experiences at the Mary Varghese Institute of Rehabilitation(a.k.a. Rehab) of C.M.C., my friend and I went up to this gentleman during the 2014 Spinal cord injury Mela (Read the introductory post here). He delightfully agreed to our proposal.

Mr. Bharatrajan is paralysed down his lumbar spine. So he can walk with the assistance of two crutches and modified support shoes in both legs.

In a framed picture in his living room, Mr. Bharatrajan is seen smiling along with the rest of his football team. That is from before his spinal injury days. Several years since, his smile has only gotten brighter as he describes his journey from the injury to his new life today, with perceptible comfort and ease. His chronicles stem from the twenty five years of his association with the Rehab, (which is in fact a little more than my age).

Mr. Bharatrajan has come a long way since his accident through the exhausting process of physical rehabilitation and his will to help others like him. Unlike other people who often grow complacent about being economically dependent, he has changed a few jobs and is currently working at a Government office as a typist. He supports his family off this job and seems content. 

 I have spoken to a number of people with disabling illnesses but very few of them are as self-reliant and dedicated as Mr. Bharatrajan. In his words, Rehab Mela for its alumni is quite like Diwali or Christmas. He believes that the alumni of Rehab and other similar institutions must congregate and work together on spinal injury issues because no one else can understand them better. What he finds most disconcerting is that such congregations continue to remain inaccessible to many due to lack of information, money or transport. He has been pro-active in organizing rehab mela in other towns in Tamil Nadu and does everything possible to address accessibility issues.

After an engrossing discussion, he wraps up the interview by sharing some words of wisdom. He emphasizes the need of building a connection with our patients. During his days of depression Mr. Bharatrajan was deeply influenced by one of his therapists that he named his daughter after her. A rehab team, he says, must remember to not just treat the condition but to touch lives. And while I nod in approval, I think to myself, only an extremely dedicated Rehab team can create empowered individuals like him.

Bigger than the pain.

Giving up was just not her thing, so she lifted the pen in a third attempt to take notes of her favourite lecture. But the piercing twinge in her wrist stopped her short. Disappointed, she lay her head on the desk and let tears soak the few scrawled lines that she had managed to write. Aditi had just turned sweet 16, but this pain in her life was only turning things sour.

Aditi’s right thumb had developed de Quervains (dih-kwer-vains) tenosynovitis due to excessive writing over the past few months. This condition is a repetitive injury syndrome to the thumb tendons, mechanism being very similar to how a rope wears off partly in places where it rubs over a pulley. In our body however, rubbing causes these tendons to swell up and become painful on movement.

Morning lectures were spent in failed attempts to write and concentrate in class, followed by further more futile appointments with doctors and physiotherapists in the evenings. Doctors said ‘PAIN KILLERS and CORTICOSTEROIDS’. Physios said ‘REST’, added, ‘COMPLETE REST’. No one said how long. No one explained how. No one seemed too sure. The pain got so disabling within 3-4 months that she couldn’t even hold a brush, use a spoon, pull a zipper or fasten a knot. Dancing, badminton and swimming had become things of the past.

Like it goes with all chronic pain patients, Aditi’s friends-family and several doctors started suggesting that she was ‘making up’ the pain or that it was sitting ‘in her head’. Meticulous class-work was replaced by borrowed xeroxed notes, peace of mind by stress and self-confidence went on an indefinite strike. She was broken in some ways, but not completely, not yet.

Aditi started practicing writing, eating and doing her daily chores with the left hand. This was a good move. Not only did it let the right hand rest and heal but also gave her a sense of accomplishment and independence. Classes were now a battle between the lecturer’s speedy delivery of information and her pre mature writing skills. But she loved the game. Miss Gandhi, a close friend helped her finish her half written notes during the break hours and evenings. Some people are just pure gold you know. Days went by. After several weeks of pleading, the administration of XIIth Board exams (CBSE) allowed her to use a scribe. Without a writer she knew she would have failed.

Right hand writing. (Left) Left hand writing. (Right)

Right hand writing. (Left)
Left hand writing. (Right)

Meanwhile, an ill administered  steroid shot in the tendon worsened Aditi’s pain and thinned down her hand muscles. The swelling of the tendons subsided. But activity level suffered due to increased weakness. She had no one to blame for the side effects that showed up. It was an ill informed choice.

The brilliant thing about taking decisions is that, whether right or wrong, they are always fruitful.They are a step towards taking charge. The pain whose fate lay in the doctors’ and  physios’ hands once was now Aditi’s own. She seemed determined to drive away this illegal tenant. So this time when she met an expert therapist, she knew this was going to be the last attempt.

She met a series of therapists who were different. They restored the lost faith. Her pain was a deep concern to them and the sessions were more personal than they had been before. One of the senior most therapist taught her to differentiate between the physical and mental components of pain. The manual techniques they taught were different from what she had learnt elsewhere. So she re-learnt the old lesson that a part of her pain was in her head, but with scientific explanations this time. With a smile rather than an accusation. The mental component of pain, as she understood, was like the bank robber from the gang who escapes and hides in the high security vault. He might disrupt the machinery for a while, but is bound to be tracked down soon. She devised her own ways to deal with it. She forbade her close ones from asking any questions whatsoever about the pain, as if pretending that it did not exist.

For the physical part, a physiotherapist asked her to maintain a pain diary that kept track of pain score with the day to day activities. The occupational therapist made her a resting splint to use for a period of 1 month to completely rest out the tendon and let it heal. Alongside she got help from a friend who trained her to play Table tennis (new to her) with her left hand. She plunged without precaution into all her old hobbies except writing with the right hand. Her innovative grip style that involved no thumb movement and another one that used only the index and middle finger to hold the pen, helped her get back to writing with the right hand

From top clockwise. 1. Normal (painful) grip.2,3,4 of Aditi’s modified grips.

Now two years later, she plays right haded badminton smashes with ease. At table tennis however, the right one never learnt how its done so she continues to be a lefty. In the last hour of her university exam when her thumb decides to go into painful spasms, she chooses between left hand writing, gripping in a different style and releasing her thumb spasms with her other hand. She might not finish the paper as neatly as she did three years ago, but she doesn’t care. She is bigger than the spasm of a thumb, than the pain. She knows that now.

All praises to the dedicated people (medical and otherwise) who cared enough to care.

For medical professionals, find more details on de Quervains tenosynovitis here. And for the possible avenues of therapy, clinicians and therapists are welcome to start a discussion by dropping in a mail here.

 

 

Narrative of the gray hair.

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Source: Google images

So Uncle James(name changed) would do all in his control to make me feel uninvited. Whether morning session or the afternoon, he would keep his eyes shut and pretend to be asleep when I went to his room for therapy. The days in which I would visit him at odd times and catch him red handed with open eyes, he would claim to be too tired. It would take a minimum of ten minutes of coaxing from his care taker and family apart from me  to get him out of bed. But we usually succeeded. Mr. James was 76 and had already been in the ICU followed by the ward for a total of over a month when I took over his case. He had had a ‘bad winter’.

Winters trouble the older adults a lot, specially the ones like Uncle James who have an underlying respiratory condition like asthma or bronchitis. Chest infections for such individuals start pretty easily and take a toll on the entire health, leaving them a few months of sickening weakness. He had been on bed rest for nearly two months now. And if you do not understand how harmful that could potentially be, try it for yourself (actually don’t! just trust me).

Getting out of bed, standing, walking and doing the daily activities were the goals we had set to achieve through the physio sessions. And it sounds easy you say? More difficult than learning the butterfly stroke in swimming , I’d say. Medically there wasn’t anything complicated in Uncle James’ body any longer. Nothing that wouldn’t let him achieve these goals, but he still couldn’t. The reason behind this was his mental state. He was depressed. He was traumatized by the ICU stay. Worst of all was that he had lost the will to get better! His mind had given up on him. And THAT was what was making the freestyle swimming seem as tough as butterfly stroke in his case.

But then again, going further into stating facts, Uncle James was among the luckiest of the lot. He was at a tertiary hospital, with his daughter and son taking turns to attend to him and grandchildren paying him visits. To top it all, after discharge he was to be taken to his ancestral home where his cousins and other people his age still lived together. Now that is the kind of luxury set up most aged people in the world can not even think of.

But inspite of all this, therapy was tough. There were some good days and some bad ones. His health would seem to take a rise and then come crashing back the next day. Patience. Dedication. Actually, a whole lot of them, and long sessions of making him open up and speak. These seemed like the perfect recipe. I can’t not mention how his eyes had lit up when he had described to me the Best teacher award that he had been awarded by the Governor in his good old days. He got better in another two weeks and was taken home. I hope he is maintaining his levels of independence till date.

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Group discussion with the elderly about nutrition

By 2050 India will have more people above the age of 60 than the current US population(323 million). And as I mentioned, only a handful have a life as secure and comfortable as Uncle James. Most others will be like one of the given scenarios.

  • A family too busy to pick illness till it is too late. Too busy to even talk to the elderly.
  • Sent out of home and living in a not so well managed old age home.
  • Independent but home alone, with/without spouse.

No I do not intend to act as the moral police for people who do not care enough about their parents/ grandparents. (However, if my words are pinching your conscience then I am glad I got you there!) What I aim to emphasize is that most illnesses of old age are manageable with early intervention followed by rehabilitation, easily continued at home by caretakers or the person himself. If an elderly person at your home has been in bed for a few weeks, getting them checked is a wiser choice than waiting a while to see if they get better. More often than not, the cause will be identifiable and treatable.

Getting them to talk it out, keep them walking and gestures of love , is as simple as it gets. Too much to ask for a generation that shaped our present?

P.s. : The Swedish government model of old age care has by far been the most impressive structure I have come across and the UN report says the same. Basic services like the health care, house help etc are provided by the municipality. In this way the older adults get to stay back in their homes with assistance and the levels of which are escalated as per requirement. This in turn reduces the burden of healthcare costs for the government. Getting a major change of this level in India will take time. But smaller local non governmental units working with the elderly can take pointers from this already. For further reading, Swedish old age care.

Redefine what’s normal, shall we?

Now ‘Normal’ is a very misleading word. By definition it refers to anything conforming to the set standards. Why I find it misleading is because the society chooses to function by the NORMAL standards  as if God tuned it to them, not realizing that it is a character born out of the society itself. And this can have serious implications on the lives of people who do not belong to the so called normal. Let me explain. The 6th standard boy from my Mom’s science class was ridiculed by teachers and scolded by his parents because he behaved ‘girly’ and liked dancing and painting competitions over Cricket and basketball (like other boys his age). Who decided that those games were abnormal for guys? We did. Such instances disturb you if you are observing closely. Another disturbing incidence happened last month during our visit to an orphanage. But before taking you to this place that my friends and I visited this Christmas, I’ll take you to my favorite Non-profit organization in vellore and introduce you to Neera (Name changed)

The Hope House,India is a registered child care institute in Vellore and I insist you read more about the incredible change they are bringing about in the lives of Neera and her friends. I met Neera when she was 3 (September 2011) while I was working on a Christmas dance choreography with the older girls in The Hope house. In the first meeting she tricked me into believing that she was a rather shy naive little girl. But few months down the line, after having spent enough time and having seen all her faces I learnt that she was one of the smartest 3 year old (Now 4years and few months) I had met thus far. However the snag was that she didn’t have a home to go to over vacations and parents to call her own, unlike most girls at Hope house. She was given away by her parents soon after she was born probably owing to the numerous physical deformities she was born with. I don’t blame them though. In the last 3 years that she has been with us, she has undergone several corrective surgeries and multiple hours of physiotherapy and occupational therapy , something a lower class family in India could not have provided to a child like Neera. Medically speaking Neera was born with Multiple congenital contractures. In this condition, the cognitive capacity of the child is unaffected but the muscles are shorter than normal. If a tight rubber band is fastened across the two ends of a hinge at a door, it would prevent the door from opening completely. Similarly in the human body the alignment and movement of forearms, wrists, knees and hips becomes abnormal. Had it not been for the lengthening surgeries and the training to walk with assistive shoes, Neera would never be able to able to sit or stand like she does today. The dedicated staff and conveners of the place have the standards set high for Neera.  In the words of the Director of the place, “Neera needed to be in an inclusive environment. We are giving her just another normal home where the siblings aren’t segregated on the account of the physical/ mental challenges they face. She needs to look at the confident, educated and elegant women that the others are growing into,  and make them her source of inspiration. That is how strong she can grow up to become, if we make her believe. ”

CMC Vellore, the hospital I work at, drills it into the mental system of all its (receptive) employees and students that there is no better way to celebrate the joy than by sharing. So that’s what we decided to do. With my batch mates (both Physios and Occupational therapists) I went to the ‘Children’s abode Orphanage’ (Name changed) this Christmas. It is another Child care institute in Vellore, a lot older and bigger than the one that I mentioned before, but running on a very different model and sadly so. It gives shelter to differently able kids ,both with physical and mental issues. We spent only an afternoon there and couldn’t learn all the fifty kids’ pasts and stories that the place had to tell. But I can assure you they are all more difficult than the worst that you can take. There were kids with Mental retardation and others with cerebral palsy(a disorder affecting both physical and mental function). Then there were burn survivors and other kids who lost their arms and legs to a disabling arthritis. Also, there were kids with medical condition like that of Neera. All of them are fed, groomed and put in their wheelchairs/ desks by the caretakers. On time. Everyday. They have visitors coming in and praying for them. They have people sharing festive joys and gifts, like us. They have a roof and four walls, walls that do not leak when it rains.

Mind to myself: No they don’t smile? Not even in the response of a handshake. Oh they don’t even reciprocate a handshake! They need interactive sessions with people who smile, that is all!

Stranger voice in the head: Does that matter? They could have died on the roads, begging. Here they are being fed, groomed and put into their wheelchairs after all.

Mind to myself: Some kids with near normal cognition and slightly subnormal speech skills interact as if they were born mute. Speech therapy sessions! They can so be trained! 

Stranger voice again: But Is that a big deal?  Fed, groomed , Wheelchair blah blah. 

Mind , still arguingThat girl can definitely stand up and walk with a walker, her limb contractures are worsening due to the lack of treatment. She needs a few physio sessions and proper handling after that.

Stranger voiceWalk? She doesn’t need that. Wheelchair it is! And the girl is safe from sexual abuse that could happen outside this place.

Mind to myself: What are they growing up to become?

Stranger voice:  They are physically and mentally challenged kids. Growing up? What are you even talking about?

Sigh. It wasn’t the best Christmas for me. I needed some time off later that night. And that was when I realized that the Stranger voice in my head was imaginative powers trying to think what the caretakers and managers at the orphanage say to justify themselves and sleep peacefully each night. I do agree that there is a lack of resources. Maybe there are not enough funds, but there is always enough scope to do more with what we have. Talking to the kids and teaching them how to smile, isn’t a financially challenging task , is it? Getting volunteers to spend some hours and educating the able ones just a little is not too tough either. There is a sensory integration room in the center of the building , quite obviously not used enough. Getting occupational therapists to give free services is not a daunting task in a city as willing to donate services as Vellore. It is not the lack of resources that is the problem, it is the mindset. The problem is that merely feeding,grooming and going to bed is what the owners and caretakers expect from these children. And even we are no different. That’s our definition of normal.

It is difficult. In a country like mine, the resources are never enough. The caretakers and service givers most often are not volunteers but employees in a non profit sector. For our society, orphans dying without a shelter is NORMAL. Differently able kids not receiving best medical care is NORMAL. Exclusion and preferential treatment with children even in middle class societies is NORMAL.The need is to teach people to set their own limits and not restrict themselves to preset standards. The need is to define the new normal.

But then again, it is not all grey. There are places like The hope house and there’s Neera. She has started walking without support and she continues to charm every doctor/therapist/volunteer who visits Hope house.

Disclaimer: No pictures of the children and the institutes are put here for ethical reasons.

For people around the world who want to help The Hope house kids or maybe just get to know Neera and her friends better, go ahead and Contact us @hope house or drop in an e-mail at  info@hopehouse.in..(India)

For those living in Vellore, Tamil Nadu or nearby places, and want to contribute services in any form to the other orphanage, which I personally strongly suggest you should try and do, Drop in a mail to me at- anumeha.srivastava19@gmail.com and I will provide the necessary information to get in touch with the Child care institute.

P.s.: The boy from my mom’s class, remember? His parents have started to understand their son’s choices and behavior better. Fewer people bully him at school now. He is even showing improvements at his dancing skills.

Kudos mom!

Fathoming Faith.

‘Now faith is the assurance of things hoped for, the conviction of things not seen.’ (Hebrews 11:1) Or like The Gita goes on to say, it is ‘The unflinching truth in something sublime.’ Tough to fathom yet undeniable. Especially in workplaces like mine, it is sometimes the only answer to questions that the science of medicine fails to answer. However, coming to the dark side of things, what if one invests his faith in the wrong authority? But then again, the parameters of righteousness are human made and far from foolproof. Well, read on.

Early morning scenes in a hospital ward are a contrasting combination of pacing feet and yawning heavy eyed faces of the hospital staff. And I’m no exception. But the last few weeks were different. My mornings were growing used to gearing up at Ali’s (name changed) beaming eyes and the gentle twitch of his lips that was an attempted smile. His eagerness for my therapy session would show all over his face! Ali had stayed in bed for nearly eight months and so the physiotherapy sessions that involved coming to sitting and standing with support seemed no less than a joyride at the amusement park to him.

Describing the medical condition he was in is the challenging bit. Sometimes the immune cells in our body act like the army that begins to target its own country men mistaking them to be insurgent militants. This process of degeneration is known as an Autoimmune disorder and can affect any part of the body. In Ali’s case it had chosen to attack the cells of brain and spinal cord, later having progressed to the heart walls. Hence his body functions like chewing, swallowing, coughing ,breathing and arm and leg movements were severely affected. Also to improve the oxygen uptake and keep chest infections at bay, a well administered slit in his trachea (throat wall) called a Tracheostomy had been done. But this meant he would not be able to ‘Vocalize’ till the slit was closed. Medicine however has wonder drugs to control (Not necessarily cure) a lot of such diseases. Sometimes these drug surprise us with their results but more often than never, they fail. Or maybe we can put it this way, before they call for Ceasefire too many country men have already been killed and hence the damage is done! And that was somewhat the stage Ali’s body had reached.

The doctors had explained to his family that they were hoping for a positive response to the drugs but the possibility of a miraculous recovery was rare. And like it goes with chronic degenerative disorders, our team of physios wasn’t setting unrealistic goals of making him walk in a fortnight. But the family was defiant. They were still in the first stage of grief – Denial. They would motivate Ali all day to try and move his right leg making false promises on my behalf that sounded like this- ‘Ma’am will make you walk like she did to the patient in the next bed! And the unsaid protests in my head sounded like this- “That was a different case altogether! And I have no magic wand with me. (Though for once I wish I did).” Throughout the therapy sessions that involved bringing Ali to standing with the help of an automated tilt machine, he would indicate with his gestures that I should make him walk already. I would humbly return this with a little more information to his brother about Ali’s expected realistic prognosis. I didn’t know then , what this family had in store for me. The brother chose a good day to tell me in a muffled voice that he had his plans all set for Ali. After our unnecessarily gentle (in his opinion) team of physios were done with making efforts, he was going to take Ali to a place where a doctor who ‘Can make anyone walk’ stayed. The Man/ Doctor/ Physio / ?Quack?, whatever he was, sent a chill down my spine! Before I could open my brain’s vault to let out arguments in protest, the guy proceeded to tell me how he had seen ‘Before’ and ‘After’ pictures at his clinic of people who weren’t able to walk (Suffering very obviously with different conditions than that of Ali). That reminded me of commercials of Hair Volume enhancing shampoos, but I let the thought pass . I ended that day’s session with a note of caution about Ali’s case being different from most others. But for a working class Indian family where education is merely a means of earning a living, understanding the severity of a disease and acting upon it was out of question.  So he made it clear that talking him out of the decision he had made would call for more than human efforts.

WPA_quack_poster

To think of it now, I really don’t know if the Doctor they are going to see is a quack or if he is an ingenious expert at Invocations. On a more positive note he can possibly be a genuine practitioner of indigenous medicine. But one thing is clear, the family has more faith in Ali’s potential for recovery than I have on the scope of my therapeutic interventions and the doctors have on the drugs. And so is their faith in the quack down the highway. Medicine and Science will probably condemn the family’s decision. But for once I think, I will be peaceful and know that Ali’s life has the backing of enormous faith. I have done the medical bit and now I’ll pray.

 

 

Leaving the readers with no informative links related to health awareness this time, but a craving to understand the need of health awareness itself! Literacy rate statistics are not helping India mush. Calling hereby for more educated society backed up by faith.
 

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Growing Up with Down’s.

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A child with Down’s. Courtesy: Google images

Google just told me that Indian railways caters to 25million people daily. That’s huge. Why I start a post on Down’s syndrome with an ode to the 62 year old transport system is because it connects people more than just literally. And sometimes it makes bonds that last a lifetime (#Richa,<3 ). So, that’s what happened. While travelling home from college last week, I met this extremely adorable 4 year old girl, Palak (name changed). Like it goes with most kids suffering from Down’s sydrome , she won everyone’s heart in the coach within hours. She would talk to everyone in a language of her own that wasn’t too clear, but people would respond nevertheless. She wanted to read the book I was reading, drink from her older sister’s cup of ‘chai’ and help the cleaner rearrange our luggage under the seats.

Medically speaking, her intelligence was lower than the average expected for her age. She had delayed milestones like seen in Cerebral Palsy.She had had trouble learning to read and write. Also as I was told, Palak used to move around by  bottom shuffling until last year. Fortunately the parents (though they did not seem very well off themselves) had been visiting CMC Vellore’s Child development department every 4 months for the last 3 years. Her mom informed me that Palak could now ‘walk’ around owing to the vigorous therapy at the Occupational therapy department at CMC. Speaking/ expressing had improved since they started taking her for the Speech therapy sessions. Best part was that her family seemed determined to do whatever it’d take to integrate Palak into the society.

And this is my favorite part, that people usually miss. The notable role that  Palak’s family(and many others like Palak’s) was playing that often remains understated. Visiting a 1000 kilometers 3times every year for a week or more is no easy task for any working couple. Inspite of that however hard I tried, I couldn’t find the slightest hint of grimace on the dad’s face.  Palak’s temper tantrums were reverted by patient words and pats. I have grown up in a country where some families don’t pamper their child enough just because she is a girl. But here I had a lower middle class family that wasn’t just pampering both the daughters but was also accommodating the differently able child with an open heart.

      God bless such families!

And oh I love the long route express railways that let me spend enough time observing the family dynamics that we fail to notice at clinics.

Hats off to the dedicated support groups and therapists that have been making a difference. Hoping for some productive research in the near future.

For families and amateur therapists like myself learning more about therapy approaches and recent developments.. here.Down’s syndrome Research foundation, Canada.

For those who wish to connect with work happening in India. downsyndrome.in

Courtesy: Down's syndrome federation of India.

Courtesy: Down’s syndrome federation of India.

For those who have a special child in their neighborhood and pity is all they have, read this compilation on myths and truths by National Down’s Syndrome Society right away!  It’s informative and well written.

And my personal favorite written by a very special person living with Down’s addressed to people who still use the ‘R’ word. An open letter.

 Spread the word!